I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

One of the things that helped me come to terms with having MS was that "it's not the worst thing that could have happened"...I'm beginning to rethink that...MS is pretty darn bad...okay, maybe it isn't the worst, but it's up there with the rest of the bad things. i think that what makes it worse than some other diseases is that the cause is unknown, it's unknown how it could affect anyone on any given day, the cure is unknown- there are just too many bloody unknowns.

One of the ways that it can affect us is with bladder control. Some patients may not be able to control their bladders whilst others may not even be able to empty their bladders (no consistency either!!!!) for me, sometimes I pee just because there is a bathroom around - not necessarily because i have to pee, but because there is a bathroom i don't mind using available. I never let it get to the point where my bladder is about to buss because if i get to that point, my ass is grass - there's no holding it for me!

I noticed that every now and again something would happen to me so i said to G, "you ever had to pee, used the bathroom and then u notice after you're done and u leave the bathroom (mind u) that, "shit! i have to go again?" Of course she said no and as usual, we moved on...i chalked it up to one of those things that just happens sometimes i guess. I subscribe to the MS Society's monthly publication and 1 day i was reading it and i saw an article on the bladder control issue and it spoke about patients' not being able to empty their bladders and it hit me, "what the?!?!?! i guess that's what i've been experiencing" i'd never thought that it was the MS - for once i didn't blame it and it actually is to blame. When it happens, it's only at nite - i drink so much water (i always say, the only things i drink are water and alcohol, i don't mess with juice and sweet drink and all the other shit out there) that sometimes i have to get up 2 or 3 times to pee at nite - well when i do use the bathroom and get back into bed to go back to sleep, that's when it give me a nudge and says, "eh eh...we not done yet" so i have to get back out of the bed and head back to the bathroom.

I've had conversations with the MS, "i mean, do u really think that it's necessary to put me thru this???? i mean i have to get out the bed, stumble to the bathroom, pee, stumble back to bed, lie down to start going back to sleep and THEN u decide to let me know that "oh by the way, u're not done yet" so i have to start the whole bloody process al over AGAIN!!!" i mean...really?!??!?! UNNECESSARY walking is not something i ever look forward to; i try to save my walking for when i absolutely must do it and in my book, this situation counts as completely unnecessary and uncalled for.

Don't get me wrong, i still know that my situation is not the worst (for sure) and maybe MS isn't the worst, but it sure is damn bad!!

“Your test results are all normal. At this point I would consider the three treatment options we spoke of. There is no hurry in making this decision, but would like to hear back from you in the next couple of weeks. If you have any questions or concerns please call me. Thanks.”

When I was a kid, doctor shows were all the rage on television. I’d seen the pronouncement of diagnosis hundreds of times. The kindly old doctor touches the patient’s hand and looks into his eyes as he breaks the news. He might put an arm around the patient’s shoulder, or comfort the worried spouse. The camera would then zoom in on the patient’s face so we can see the emotional impact up close and personal.

But it seems we’re not going to get our Marcus Welby moment … or anything that even vaguely resembles one.

The email that changes everything lands in my inbox on January 28, 2004, at 2:19 p.m. Just another email mixed with a batch of well-worn jokes and plenty of spam.

The test results are all normal. It is one of those good news/bad news situations. In this case, however, normal does not translate into a clean bill of health. It is in this instant, through this most impersonal exchange, that normal takes on a whole new meaning for me.

The email comes as no surprise. Diagnosis or not, life as I know it has already been altered beyond recognition. Still, the doctor doesn’t actually use the words. The meaning of the email, prompting me to decide on treatment options, is clear … but not clear enough. I want to hear the words, or at least read them. I want and need this diagnosis to somehow be declared official before I make any decisions. This is a very big deal.

The news is, for the moment, known only to the doctor and me. I fantasize briefly that if I delete the email, that if I pretend I don’t know, it won’t be true. If ignorance is bliss, maybe I can simply refuse to accept the information I’ve been given, like a child who ignores her mother’s call.

Until this moment, I could still hold out hope that it was all some colossal mistake or overreaction on my part; just one of those things that happens and is soon forgotten. Sure, I’ve had health problems like everyone else, but nothing like this.

Even while these thoughts run through my mind, I’m aware of another stream of consciousness floating alongside. I consider these feelings as being a normal first response because, after all, nobody plans to be disabled or sick. It’s just the luck of the draw and on this particular day it happens to be my turn to draw the short stick. I was never one of those “it won’t happen to me” types. I’m more of a “why not me?” kind of gal. I always figure I’m as good a target as anyone else, for both bad and good life events. Now, when it’s put to the test, is my chance to see if I truly subscribe to that philosophy.

My fantasy of just ignoring the news is short-lived; the realist in me wins out and I return to the task at hand. I hit the reply button and type, “Thank you. Does this mean I have a definite diagnosis of MS?” I marvel at my own matter-of-fact attitude. I am not about to let emotion rule the day and my stoic New England heritage is firmly in control...

It’s truly an evil disease, this MS of mine. I’ve been using these blog posts to keep everyone up-to-date on fund-raising efforts, the events to ‘give back’ for those who’ve contributed, but I haven’t really given a reaction beyond telling people how thankful I am, how oh-so-humbling this experience has been thus far, how I am elated at the incredible response I’ve received from friends, family, strangers–but I’ve failed to give my own personal, first-person point-of-view of precisely how I feel about all of it. So, indulge me; let me ‘exhale’ on all of it.

I’m scared. I’m scared. I’m scared.

To put it in the right ‘frame’, you need to know that my Father was diagnosed in 1985, a couple of years prior to my entry into the world. As a teenager, I watched my Father’s disease progress–his own personal ‘MS claw’ had a grip, though the speed at which his claw grasped him was entirely different. It was 10 years before we began having to pick him up off the bathroom/bedroom/living room floor and help him get back to his feet. It was 15 years before its talons began to break the skin and draw blood; that is to say, before he had completely lost his ability to walk. He now lives in long-term care, his MS claw never leaving him, its grip only ever tightening as we all look on, helpless, powerless, and impotent to do something, anything for him. This understandably really defined what my biggest fear was.

That, one day, it’d be ME being picked up off the bathroom/bedroom/living room floor. That, one day, it’d be me being grasped, clutched, left scarred and bleeding by my own MS claw. Then it happened. Biggest fear become reality. To my astonishment, the craziest thing happened: I dealt with it. And I continue to deal with it, as the claw tightens and loosens its grasp, I adjust. It never lets go. It has cut me several times. I can’t walk. I can’t type. I can’t contain my bladder’s contents. I have ‘difficulty’ with romantic intimacy (I will allow you, to quote the Immortal Bard, to “take it in what sense thou wilt”–use your imagination…).

But I deal. Everyday. I find it astounding how well a person can adjust to change–we all hate it, most of us, given the option, never would–but when you lay your cards out, drop the ones that serve no purpose, and focus on what matters and what’s important…and hope that you can pick up what you were missing for a good hand, the resiliency of the human spirit can take flight; if you’re as lucky as I am and are surrounded by courage, strength, and lots of good ol just plain awesome. I find it in my family. I find it in my friends. And they’re all pulling at the claw, trying to help release me from it’s seemingly herculean grasp. It’s why I’m still here. It’s why I still believe life is worth living, whether I’m running, walking, or rolling…

But I’m still scared.

I’m scared the $20k+ that my friends, family, et al helped me raise is all for naught.
I’m scared that I may find some relief from endovascular therapy only to watch and feel the squeeze of that claw as it does what it is programmed to do and just keep on squeezing, breaking my skin, drawing blood, leaving me scarred with no hope of recovery.
I figure since my biggest fear became my every waking second…it’s about time I found a new one, yeah?

One might say I’m being melodramatic. And perhaps I am. But despite how irrational it may seem and despite how easily you as an objective 3rd party may be able to poke holes in my fear-theories…it don’t take ‘em away.

The claw’s still there.

Its grip is still getting tighter.

1 month to the day ’til the plane hits the tarmac in San Jose. Until then…1 day at a time.

Our designer sent it to the printer on Tuesday, Aug. 2, and we’re hoping you are as excited to read it as we are to share it with you!

“Despite MS, to Spite MS” is a compilation of our essays describing our experiences, emotions and attitudes in living with this chronic disease of the central nervous system.

We were quite nervous and overwhelmed when it first was suggested to us that we should pursue self-publishing a book of our stories. But the more we thought about it, we realized it was a needed step for us to take to increase MS awareness and help people to move forward with their lives.

Guiding the themes of each section are some of the most inspirational and motivational haiku-style poems our friend and fellow blogger Judy Williams has written for her blog, Peace Be With You on the MS Journey. We are so honored to include her in our book!

Thinking back to the day in 2002 when I met Jennifer at the “Finding Your Buried Treasure” event in Frankenmuth, I recall one of the activities where we had to cut out magazine pictures to place on what was to be the treasure map for our lives. The pictures were to be of things that were important to us.

Among the images I included were of a book – something I always had wanted to write –Bruce Springsteen (of course!) a church, and a family.

So here I am some eight years later self-publishing a book that includes essays I needed to receive copyright permission from a Lutheran Church organization and Springsteen to print. And I truly am blessed that I wrote, compiled and edited this book with my wife, Jennifer. Visit the website www.despitemstospitems.com to learn more.

This concludes the 95th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 1, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 30, 2011.